The German Act [...] adopts an extremely protective, even fearful, view of genetic information as something so dangerous and private that the generation and disclosure of genomic data must be mediated solely through specially trained physicians, accompanied by psychological and social counseling, and subject to destruction of the data at any time upon the request of the subject individual. In addition to tightly regulating the doctor/patient relationship, the Act appears intended to outlaw (or at least highly restrict) DTC genetic testing services. One of the laudable purposes of the act, “to protect human dignity and to ensure the individual right to self-determination via sufficient information,” is belied by provisions of the Act that restrict the ability of individuals to access their own genetic information directly.
Why is Germany leading the world in terms of paternalistic, regressive legislation against genetic testing? No doubt there are multiple reasons, but it’s clear that this regulation is driven in part by a desire to steer well clear of anything that might stir up memories of eugenics and medical experimentation on unwilling subjects conducted half a century ago.
Yet those horrors were the result of a government making decisions for people, against their wishes – and as Clark notes, this Act permits the German government to restrict the ability of individuals to make their own decisions about how and when they access their own genetic information.
If the German government wants to demonstrate that it has learnt its lessons from the horrors of its past, it should step back and allow its citizens to make their own informed decisions about their own health, and to gain access to their own genomes without restriction should they wish to do so.
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